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Patient Stories

A Fighting Chance

Richard Robbins, a 58 year-old real estate developer and hotel management
consultant, was on top of the world. It was 1997, and he had just been
named to an elite group of hotel and motel brokers. There are only a few
dozen members in the United States, and the eligibility requirements are
stiff. He had spent most of his work life managing, marketing and selling
hotels in Florida, Texas and the Caribbean; this was an honor he had worked
hard to achieve. He had paid his dues and now he was enjoying the fruits
of his labors.

Richard was in excellent physical condition. He had to be. The father and
step-father to eight children, with two young daughters at home, he was
a very busy man. Like all men of Richard's caliber, he had a passion
for life. He loved running. Richard routinely awoke early to run six miles
in order to "to clear his head and refresh his soul." He was
very disciplined, sticking to his morning run routine even when he returned
home late from a business trip. The man believed that a healthy mind must
be housed in a healthy body.

During a five kilometer run in the summer of 1997 in Orlando, Florida,
Richard experienced unusual shortness of breath. He initially thought
it was just a virus. As he put it, "I'm just off." He also
thought it might be age catching up with him. After all, he was almost 60.

Richard Robbins did not have time to be sick. He had business deals to
make. He had places to go, and people to see. Mr. Robbins was a pillar
in his community. Apart from work, he was active in charities and was
involved with a wheelchair tennis program. He was
needed.

Even though he was busy, he did not ignore his symptoms. He went to his
regular physician complaining of a dry cough, tiredness and a heavy feeling
in his chest. Chest films taken on September 17 and September 28, 1997
showed evidence of left lower lobe pneumonia with some pleural thickening.
He was treated with antibiotics, which relieved some of his symptoms.

Richard continued to have follow-up chest x-rays with no remarkable changes.
In December, 1997, he had a CAT scan, which indicated the presence of
pleural effusions. The recommendation of his doctor was to watch and wait.
On a May 6, 1998 visit to his physician, he explained that he could no
longer run the four to five miles he was accustomed to, and was now running
two miles or less, only once or twice a week. At the beginning of each
workout he felt a tightness in his chest accompanied with a shortness
of breath; but as he continued to jog he would feel better.

Finally, his physician decided to take things a step further, and she referred
him to a pulmonary specialist. The specialist admitted him for an outpatient
bronchoscopy. The test results were negative. Little did the Robbins'
know the test was the wrong one: the doctor was looking at the inside
of the lung, instead of outside the lung. Again, the advice was to keep
trying to run and work, the fluid seen on the x-ray would eventually disappear.

Richard did just that, but in the late summer and early fall, he began
to experience lower back and shoulder pain. His regular physician, thinking
Richard might have kidney problems, scheduled Richard to see an urologist.
The urologist found nothing of concern. Richard was a picture of fitness.
It was hard to believe that anything so utterly malignant as mesothelioma
was lurking within him.

So, Richard continued to press on with his grueling sixty (60) hours a
week schedule. Still, he could not shake the "flu-like" symptoms.
On October 11, 1998, his doctor diagnosed him as anemic, giving him a
prescription. The doctor also asked Richard if he thought that another
prescription of antibiotics would help him. All Richard knew was that
he had lost ten pounds, was feeling like hell, and not getting any better.

Very driven, Richard continued to work 50 to 60 hours a week. Many nights
he would come home and go directly to bed. However, unable to sleep because
of increasing pain, he tossed and turned. He was now unable to get up
in the mornings and was frequently still sleeping when his wife Ann left
for work. He rarely spent time doing the things he loved; rather, he exhausted
all his energy trying to work. Juggling his work between good and bad
days became his everyday life. Then, on Christmas Eve 1998, his wife Ann
came home at noon to find him sleeping. He got up for a short time and
returned to bed by 3:00 p.m. Richard did not attend Christmas Eve services
with the family and was only up for a few hours on Christmas Day. On New
Year's Eve he was unable to stay awake to ring in the New Year. However,
he was optimistic. Before he went to bed, he confidently declared, "1999
is going to be our year."

The "flu-like" symptoms continued and Richard continued to try
to work. Ann was getting irritated. Richard had been sick for sixteen
months. Something was desperately wrong, and no one was providing any
answers. On the evening of January 16, 1999, she put her foot down and
demanded that he see another physician. She gave him the card of another
doctor and Richard promised he would call him in the morning. That night,
just after midnight, Richard woke up in terrible pain. He collapsed as
he got out of bed. Ann could not revive him and within five (5) minutes,
the ambulance was rushing Richard to the hospital.

The CT scan revealed a large tumor encompassing the left lung. Blood clots
were found in the pulmonary artery. The surgeon explained that Richard's
tumor was like an orange peel that had engulfed the lower left lung. The
surgeon hoped he could remove most of the tumor. The surgeon made a twelve
(12) inch incision to provide ample room for removal of the tumor. But
when the surgeon opened Richard up, he found that the tumor was the texture
of "
concrete" -- concrete that was three inches thick and surrounding the entire
left lung. The surgeon began scraping off a small section of the tumor
but gave up after only one hour. There was nothing else he could do. He
sent the excised tissue to the pathology laboratory, which promptly analyzed
the tissue and diagnosed malignant mesothelioma. Sadly, the surgeon told
Ann "I should have met Richard a year ago" when the tumor was
smaller and operable. He advised her that the two of them should "go
home and have a good time." He indicated that treatment was futile
and would only destroy what little time Richard had left.

Richard ignored the surgeon's advice and was determined to seek treatment
and beat the disease. The Robbins' met with an oncologist who explained
the usual protocol of chemotherapy and radiation. The oncologist warned
that mesothelioma was a very difficult cancer to treat. That oncologist
felt Mr. Robbins should seek out a clinical trial, as the usual treatment
would probably not work. She referred him to Shands Cancer Center in Gainesville,
Florida. After reviewing all the reports, Dr. McCarley, the oncologist
at Shands, told them about Dr. David Sugarbaker at Brigham & Womens
Hospital in Boston.

In mid-February of 1999, Dr. Sugarbaker did a preliminary review of Richard's
medical reports. Dr. Sugarbaker felt that he may be able to help Richard.
An appointment was scheduled for March 2, 1999. On February 28, an MRI
was done in Orlando, and on March 1, 1999 the Robbins traveled to Boston.
The following day, Richard underwent a series of tests and met with Dr.
Sugarbaker. Dr. Sugarbaker accepted Richard as a candidate into his protocol.
He explained the surgical protocol and the risks.

Although the MRI showed that the tumor appeared to be confined to the left
lung and potentially the pericardium, and because the surgery would leave
Richard totally dependent on his right lung to function, Dr. Sugarbaker
indicated that if the cancer had spread anywhere else, he would abort
the surgery. In his left lung he had "fist size" air capacity
and Dr. Sugarbaker indicated that the tumor had probably been there for
over a year. Richard still needed some time to heal from January's
grueling surgery. The Robbins' left Dr. Sugarbaker's office with
a glimmer of hope. Still determined to carry on, Richard had scheduled
a business meeting the next day in Boston. He was working on the "deal
of a lifetime" and he continued to be motivated. Of course, he kept
the appointment.

A tentative surgery date was scheduled for April 24, 1999. During this
interval, Richard was to try to build up his strength and gain weight.
Sadly, Richard could do neither.

On Friday, April 10, 1999, Ann stayed home from work to care for Richard.
He had severe abdominal cramping accompanied with vomiting, and there
was blood in his stools. The morning of April 11th, Ann insisted that
Richard go to the hospital. However, he refused; it was their daughter's
17th birthday, and he was determined not to miss it. Late that night,
Ann overruled his protests and rushed him to the emergency room. Richard
coded on the table. Even though he had a DNR order, Ann was not ready
to let him go. The emergency room staff revived him four times throughout
the night. For the next three to four days, Richard lay seriously ill.
His voice was hoarse, bubbly and full of air, but he could not breathe.
He had blood clots in his heart and lungs, and pneumonia had set into
his right lung. He coded again, and against his wishes, Ann consented
to placing him on a ventilator.

Emergency surgery was the only answer. The fluid had to be drained from
around his heart or he would die. The cardiologist felt that if he could
drain the fluid, he might be able to get Richard to Boston for his surgery
with Dr. Sugarbaker. But the hospital system that Richard was in could
not immediately do the operation. He had to be moved, and quickly.

Richard's cardiologist took matters into his own hands. He had Richard
admitted to another hospital system in Orlando and scheduled the surgery.
But Richard still had to be moved. The hospital's ambulance and helicopter
were not available, so the doctor called the sheriff's department
for a helicopter, but was unable to get one in time. Finally, the doctor
called 911 and within minutes, the paramedics arrived and moved him for surgery.

On the way to the hospital, Richard coded four times in the ambulance.

The surgery went as well as could be expected, but there was substantial
damage to Richard's heart, and he was very weak. A chest tube was
inserted to continue to drain the fluid away from the heart. When Richard
awoke from the surgery, he was unable to speak as he was still on the
ventilator and had a tube down his throat. Desperate to communicate, he
used his index finger to spell the letters "B-O-S-T-O-N" into
Ann's palm. He was still determined to get there. On April 20, 1999,
Richard was removed from the ventilator. In his first words, he begged
Ann to call Dr. Sugarbaker and reschedule his surgery. Late that night,
he asked Ann if he was getting worse. One of the last things he said to
her was, "I have to go to Boston . . . I really want to see summer."
Early the next morning, on April 21, 1999, Richard passed away.

Mesothelioma can be difficult to diagnose properly. Patients with a high
pain threshold, like athletes, may delay seeking medical help. When they
do, a presumptuous doctor may seize upon the outward appearance of health
and attribute symptoms to common afflictions. A presumptuous doctor in
this scenario may fail to order the proper diagnostic tests, or he may
misread the test results. Richard Robbins was an athlete -- a smart athlete
who knew every tick, ache and gallop in his body. He knew something was
wrong. He did seek medical treatment. His doctors, however, did not help
him. They did not look behind the surface. With mesothelioma, there is
no margin for error. For the patient to have a fighting chance against
this deadly and aggressive tumor, his doctors need to diagnose it early
and immediately set out a multi-faceted treatment plan. A patient "lucky"
enough to have his tumor diagnosed early must then show the fortitude
and courage to never give up. The idea is always to buy more time. With
each day that passes, as long as there are doctors and scientists toiling
away in the laboratories searching for a cure, there is hope that doctors
may find that silver bullet.

Richard Robbins had "the right stuff." He could recognize and
rise above pain. He had a zest for life. He sought out opportunities to
beat the odds. He was
vital; he was needed. He was a closer. We can only speculate, but given a fighting
chance, Richard Robbins might still be here -- fighting the tumor, buying
time, never giving up.

Richard Robbins never had a chance in the last and most important race
of his life. By the time Richard finally found a caring and discerning
doctor, his mesothelioma had an insurmountable head start. All Richard
could do at that point was fight with every ounce of his being to be an
example of courage and fortitude to his family and friends. Richard did
this. His loving wife and children only hope that this story may give
someone else the will to take control of his or her medical treatment
and not be lead down the wrong path by an incompetent or thoughtless doctor.

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